FETAL ALCOHOL SPECTRUM DISORDER
A Guide to Awareness and Understanding
A
Letter to our Readers
FASD: A Guide to Awareness and Understanding includes a selection of materials gathered and prepared by the
FASD Network of Saskatchewan. The intention of this guide is to provide basic information about Fetal Alcohol
Spectrum Disorder for a variety of readers including parents, caregivers, family members, professionals, students,
frontline workers and members of the general public. We hope that by increasing awareness and understanding
of FASD, we will help to improve the lives of individuals and families living with FASD.
A list of suggested websites, organizations and print resources has been included to aid in your information gathering. We
encourage you to please contact the Network if you are looking for further information or view our resources online by visiting us at www.saskfasdnetwork.ca.
Finally, we offer support and information to parents, caregivers, individuals with FASD and professionals on our toll free line
at 1-866-673-3276. Feel free to contact us Monday to Friday, 9:00 a.m. to 4:00 p.m. Copyright © 2007, Revised 2015 FASD Network of Saskatchewan Inc.
TABLE OF CONTENTS
03
05
06
07
09
About the Network
Providing Support
Understanding FASD
Diagnostic Criteria
Primary Disabilities
13
15
17
21
22
Paradigm Shifts
Common Beliefs
Strategies for Success
Mentors
Resources
ABOUT THE NETWORK
The FASD Network of Saskatchewan is a provincial organization that works with families, children, and adults affected by Fetal Alcohol
Spectrum Disorder. A group of dedicated parents came together in the early 1990s seeking support and understanding. They had
common concerns about the challenges related to parenting children affected by prenatal exposure to alcohol. When the Network
began, very little was known about FASD. Families faced stigma, lack of services, and misunderstanding.
Now, 20 years later, the Network is a community-based provincial organization with an office in Saskatoon. Over the years, the level
of knowledge and understanding in Saskatchewan communities has grown along with the Network. The Network has expanded from
a group of concerned parents into an organization led by a 12-member board of directors offering support, training, and events
across the province.
Close ties and partnerships with community members, professionals, funders, and all levels of governmental departments aid the
Network to accomplish activities aimed at improving the lives of individuals and families living with FASD.
03
Our vision is:
“For individuals living with FASD and their families to recognize
themselves as safe, supported, valued, included, and contributing
members of the community”
TRAINING
The Network offers a variety of tailored
training sessions to organizations that work
with individuals living with FASD.
These training sessions provide an in-depth
knowledge of FASD presented by qualified instructors with a background in the
disability. The Network continously works
on updating and developing curriculums for
frontline workers, foster parents, educators,
post-secondary students, and community
organizations.
These sessions can be held anywhere in
the province. By receiving training on the
disability, organizations that work with
individuals living on the spectrum can gain
a better understanding of FASD and tailor
supports to the individuals’ needs.
SUPPORT
The Support Program was created to give
families direct support in their daily lives.
The program aims to work with families and
circles of support to gain positive outcomes
for those living with FASD. A Support worker
will work to clarify the individual’s shortterm goals and determine a plan to reach
these goals. The program provides assistance via case management, employment
services, peer support, strategies, justice
system navigation, referrals to community
programs, and more.
Support workers have an in-depth understanding of FASD that can be shared to
help individuals and families living with FASD
achieve success.
EVENTS
Along with our training sessions, the Network offers several annual events that provide education and training on FASD.
These events include an annual conference tailored to meet the needs of different
sectors, Principles & Practices workshops
that travel across the province to provide
professionals with an introduction to the
disability and strategies for success, as well
as events created specifically for caregivers
and individuals living with the disability.
The Network regularly updates its website
to provide information on upcoming events
and appreciates feedback on the types of
events communities would like to see in
Saskatchewan.
To access these services contact us at 1-866-673-3276 or visit www.saskfasdnetwork.ca
04
PROVIDING SUPPORT
Professionals
Those who choose careers in human services such as education, community or family support, health care, justice, social services,
or mental health and addictions treatment will be in contact with individuals with FASD. If various professionals are aware of FASD
and understand the signs, symptoms, and implications of living with FASD, they can modify their daily practice in order to better serve
individuals and families. Through improved services and by making accommodations for a brain-based disability, the challenges of
individuals and the professionals will be lowered and chances for success will be improved.
Caregivers
Being a caregiver is one of the hardest jobs out there. Caring for an individual living with FASD comes with its share of struggles and
frustrations as well as accomplishments and successes. Educating yourself about the disability is the first step. Understanding your
child and how his or her brain works will help you understand what you can do to accommodate his or her needs. It is also important
to be understanding towards birth parents, as no parents want to harm their babies; we need to have compassion when they share
their stories. We encourage you to connect with other parents to learn new strategies and information and to share stories.
Communities
We know that the rates of FASD are high. If 1 in 100 individuals are affected by prenatal alcohol exposure, think about the number
of people you encounter each day in your personal, professional, or public life. People with FASD are members of our communities.
They are friends, family members, neighbours, volunteers, students, and workers. It takes a community to raise an individual living
with FASD. Each of us are unique and we each contribute to our communities in our own ways; we each have strengths, struggles,
rights, and responsibilities. Acceptance of diversity, gained through improved understanding and awareness of FASD, will create
strengthened and inclusive communities and improve individual lives.
05
UNDERSTANDING FASD: BASIC INFORMATION
What is FASD?
health of the mother, stress levels, exposure a societal norm within some communities
The term Fetal Alcohol Spectrum Disorder to other substances and genetic makeup. (statistics show that about 80% of society
consumes alcohol and 50% of pregnancies
is a disability that can occur in children,
youth or adults prenatally exposed to alco- The central nervous system (CNS) is are unplanned.) Women will need support
from family, friends, partners, and commuhol. The spectrum of effects includes four particularly vulnerable for two reasons:
nities to abstain from alcohol.
categories of primary disabilities: cogni•
The
CNS
develops
throughout
the
tive, behavioural, physical, and sensory.
entire pregnancy so injury to neurologi- How many people are affected by FASD?
The disabilities caused by alcohol exposure
cal functions can occur over the entire In Saskatchewan, it is believed that 1 in 100
are present from birth, but some are not
nine months.
noticeable until later in life. It is important
people may be affected by FASD. However,
to remember that with the right supports • Alcohol acts as a solvent on the rapidly it is difficult to know just how many families
developing cells of the CNS and causes are affected by FASD as a lot of individuthese individuals can and do succeed.
significant injury, primarily to the brain. als go undiagnosed their entire lifetime.
The signs and symptoms of FASD often
How does alcohol harm a fetus?
go unnoticed and are masked by other
Can
FASD
be
prevented?
Alcohol is a teratogen, meaning that this
substance is toxic to, and can negatively We need to keep in mind the various factors in the individual’s life or are
influence, prenatal development. When a factors surrounding the choice to drink attributed to other causes. This is why
woman is pregnant and drinks, the alco- during a pregnancy when we talk about FASD is often called an invisible disability.
hol passes freely through the placenta and prevention. The public requires clear and Individuals with invisible disabilities in
enters the system of the developing fetus. accurate information about the harmful many cases do not receive the support and
Alcohol remains in the system of the fetus affects of alcohol on a fetus. There is no accommodation they need to succeed in
longer than that of the mother. The alcohol known safe amount of alcohol or a known life. Many people with FASD have an IQ
injures the body systems and organs that safe time during pregnancy to consume in the normal range, but the various cogare developing at that stage of the preg- alcohol. For these reasons, it is best for nitive processes have been altered. With
women to abstain from alcohol throughout appropriate supports and changes to their
nancy.
the entire pregnancy. This information and environment, individuals can be productive
Our brains continue to develop after birth, message needs to be widely available and and successful members of society.
so alcohol should also be avoided when consistent in communities and throughbreastfeeding. Many factors influence the out the health-care field. We also need to
amount of injury resulting from prenatal understand that many people may be
exposure, including the amount of alcohol living with addictions or mental health
consumed, how often alcohol is consumed, issues. They may have a history of abuse
the timing of consumption, the general or lack of supports. Alcohol may also be
06
DIAGNOSTIC TERMS
In 2015, changes were recommended to the diagnostic
guidelines for Fetal Alcohol Spectrum Disorder. The
guidelines were changed to improve diagnostic criteria
and capacity for FASD based on emergent evidence
and current practice.
Diagnosis and assessment of prenatal exposure is a complex process best completed by a
multi-disciplinary team of professionals that must
include a physician specially trained in diagnosis and
assessment.
Diagnostic and assessment services are available
throughtout the province but families continue to face
barriers to these services. Barriers include long wait
lists, services that are more widely available to children
and youth rather than all age groups, lack of trained
professionals, difficulty for families in remote and rural
regions to access diagnostic and assessment services
due to cost of travel and long distances to services.
We understand that there are difficulties accessing
diagnostic and assessment services, but this is an
important process that can improve outcomes for
individuals and families.
07
A common area of confusion for families and professionals is the language used around diagnosis.
The following are the diagnoses that can be received within the spectrum of FASD.
FASD
with sentinel
facial findings
(FAS, pFAS)
FASD
without sentinel
facial findings
(ARND)
At Risk for
neurodevelopmental
disorder and FASD
(included as designation)
• Prenatal exposure to alcohol
confirmation not required
• Prenatal exposure to alcohol
confirmed
• Prenatal exposure to alcohol
confirmed
• Three facial features
• No facial features required
• OR must have all three facial features
• Three domains of impairment
• Three domains of impairment
• Clinical concern about development
The 3 facial features refer to: thin upper lip, short palpebral fissures (the opening between eye lids) and smooth/flattened philtrum
(the groove between the nose and lip).
The ‘domains of impairment’ refer to how an individual rates in the following areas: motor skills, neuroanatomical/neurophysiology,
cognition, language, academic achievement, memory, attention, executive functioning including impulse control, affect regulation
(mental health), adaptive behavior (social communication).
The former diagnoses that may still be encountered include: Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (pFAS),
Alcohol Related Neurodevelopmental Disorder (ARND) and Alcohol Related Birth Defect (ARBD).
It may take time for individuals to decide if they would like to seek a diagnosis. You can help by being patitent and understanding
throughout the entire process.
08
PRIMARY DISABILITIES
Fetal Alcohol Spectrum Disorder (FASD) describes a lifelong disability resulting from prenatal alcohol exposure. Maternal alcohol
consumption injures the structure, function, and design of the brain resulting in a brain disability that is invisible to us. What is visible to us are the primary and secondary disabilities. It can be helpful to understand the various primary disabilities as well as the
secondary disabilities associated with FASD.
Primary disabilities are those disabilities that are directly caused by the prenatal exposure to alcohol. Primary disabilities may impact
physical, cognitive, behavioural, or sensory functioning.
PHYSICAL DISABILITIES
09
COGNITIVE DISABILITIES
Prenatal exposure to alcohol can affect how a body grows
and develops. People with FASD can have differences in
how their bodies are formed and how they move.
Cognitive functioning refers to intellectual tasks like
thinking, reasoning, and remembering, which are crucial in
our everyday functioning.
Physical disabilities can include:
• Slow to meet developmental milestones
• Problems with fine and gross motor control – things
like throwing and catching a ball, holding a pencil,
hopping on one foot, riding a two-wheel bike, or using
scissors
• Poor balance and co-ordination – clumsy, bumping
into things
• Lower height or weight
• Auditory impairments
• Weak heart, heart murmurs, frail bones, and other
body system abnormalities
Cognitive disabilities can include:
• Difficulty with memory
• Confabulation – filling in gaps in memory with
storytelling
• Slower to process information
• Short attention span
• Impaired executive functioning
• Difficulty setting and reaching goals
• Problems generalizing from one situation to another
• Problems connecting cause and effect
• Poor receptive language skills
• Trouble understanding abstract concepts like time,
money, or math
• May have lower IQ
BEHAVIOURAL DISABILITIES
Your brain controls your behaviour in social
interactions. Individuals with FASD may seem
to display strange or inappropriate behaviours
because their brains do not process other
people’s actions and words in the same way.
SENSORY DISABILITIES
Every day, your senses take in a huge amount
of information from your environment. Receiving and interpreting this range of information is
called sensory processing. Because the brain
takes in so much information, the sensory
system works best when all senses work
Research on FASD has found learning and together, which is called sensory integration.
behavioural differences between people with
FASD and others in relation to their develop- Prenatal exposure to alcohol can damage the
mental age. Dysmaturity is when someone’s central nervous system and cause sensory
developmental age is younger than his or her processing or integration problems. Generally
physical age, so they act and think young- this looks like over- or under-sensitivity in taste,
er than they are. For example, the develop- smell, touch, hearing, sight, vestibular input
mental age of a 16-year-old could be clos- (movement sensation), and/or proprioception
er to that of an 8-year-old. In order to be (a sense of where your body is in relation to
appropriate and effective, expectations need to your surroundings). This can result in sensory
be based on developmental level rather than seeking behaviours such as unusual hyperacchronological age.
tivity or avoidant behaviours such as shutting
down to any responsive actions.
The behavioural symptoms of FASD may
Sensory disabilities may look like:
include:
• Poor sense of smell
• Impulsive actions
• Trouble discerning objects in clutter
• Mood swings
• Becomes carsick easily
• Inflexibility
• Hand on wall while walking
• Lack of inhibitions • Unusually low pain tolerance
• Reacting poorly to changes in routine
• Craves touch
• Poor understanding of ownership
• Overwhelmed in noisy spaces
• Poor understanding of personal space
• Poor ability to express and/or understand a • Overactive gag reflex
range of emotions
• Repeated mistakes
• Vulnerable to peer pressure
• Easily overwhelmed
• Grandiose or unrealistic expectations
• Problems with social skills
• Problems with interpersonal skills
• Trouble reading social cues
FASD is a unique
disability that affects
each individual
differently
SECONDARY DISABILITIES
Secondary disabilities are those difficulties that arise later in life due to a poor fit between the individual’s needs, level of functioning, and the environment. Complications arise most often because of undiagnosed primary disabilities, lack of intervention, lack of
services, ineffective strategies or unrealistic expectations. Many organizations and people are not educated on FASD and the brain
differences that influence behaviours. Having FASD doesn’t mean that these things will definitely happen, just that it is more likely. If
we put the right supports in place early on, we can help to avoid secondary disabilities.
Some common secondary disabilities and characteristics related to FASD are:
• Mental health problems
• Addictions
• Substance use
• Legal problems
• Inappropriate sexual behaviours
• Employment problems
• Emotional problems and violence
• Housing problems and homelessness
Let’s see what this may look like:
At school, students are expected to learn quickly, follow along when the teacher is talking, sit still for long periods of time and
remember things later during exams. However, students with FASD can have trouble with memory, process words more slowly
than most people, or get headaches and pains under fluorescent lighting. This makes it difficult to succeed in school unless the
teachers, educational assistants, and other students understand that FASD makes your brain work differently.
“With the right support, secondary disabilities can be prevented”
12
PARADIGM SHIFTS
When families, caregivers, professionals, and community members
change their own understanding or perception of the individual with
FASD, this is called a “paradigm shift.”
Person first language puts the person before their disability.
Person first language distinguishes an individual from the disability and
emphasizes that FASD is not that person’s defining feature. For
example, instead of referring to a client as “an FASD youth,” refer to
that individual as “a youth living with FASD.” Person first language
encourages us to get to know the individual first and then explore how
the disability impacts his or her everyday life. In order to support individuals living with FASD, we need to understand them broadly (what
do they want to achieve, what are their motivations, their likes and
dislikes, their personalities, their strengths/weaknesses etc.) while also
understanding the influence of FASD.
Strength-based approaches shift our understanding away from
conventional practices and encourage us to think outside the box.
A strength-based approach not only draws on the strengths of the
individual but on the strengths of his or her support system, family,
services provider, community, and friends. Strengths are resilient
characteristics which can be built on in order to achieve success.
Though people with FASD may face challenges, it is important to
recognize the strengths, skills, and interests of each person. People
with FASD are willing and able to learn when strategies match learning
styles and build on strengths rather than deficits.
13
From seeing the child as: To understanding them as:
Bad, annoying
Lazy, unmotivated
Lying
Fussy
Acting young, babied
Trying to get attention
Inappropriate
Doesn’t try
Won’t
Frustrated, challenged
Trying hard, tired of failing
Story telling, filling in the blanks
Oversensitive
Being younger
Needing contact, support
Behaviour of a younger child
Exhausted or can’t get started
Can’t
From personal feelings of: To feelings of:
Hopelessness
Fear
Chaos, confusion
Power struggles
Isolation
Hope
Understanding
Organization, comprehension
Working with
Networking, collaboration
Professional shifts from: To:
Stopping behaviours Preventing problems
Behaviour modification Modeling, using visual cues
Changing people Changing environments
14
COMMON BELIEFS ABOUT
Belief: All people who have FASD have belowaverage IQ. THIS IS NOT TRUE.
The truth is:
• Some individuals with FASD have below-average IQ.
• Some individuals with FASD have average or
above average IQ.
• Because of the damage to the brain and central
nervous system, individuals with FASD may have
troubles learning in different environments.
• Individuals with FASD are usually at a lower
developmental age than their chronological
age.
Belief: Individuals with FASD will outgrow their
difficulties. THIS IS NOT TRUE.
The truth is:
• FASD is a lifelong disability.
• With the right supports in place, they can learn
to make adaptions to support their disabilities.
• Your child may need your support throughout
adulthood as well.
Belief: The behaviour problems of individuals who
have FASD happen because their parents are not
doing a good job of parenting. THIS IS NOT TRUE.
The truth is:
• Brain damage can lead to primary disabilities.
These primary disabilities can mean that an
individual does not always behave as others
expect them to.
• Individuals with brain damage can be challenging to parents, but by educating yourself, you
can better understand your child.
• As a parent of a child who has FASD you need
the support of your family, friends, and the
community. It is very difficult to go it alone.
Belief: Because an individual with FASD has brain
damage there is no point in helping them.
THIS IS NOT TRUE.
The truth is:
• If individuals with FASD are supported throughout their lifetime they will succeed.
• We need to adjust our expectations to match
their developmental age and redefine success.
• Advocating for your child will help family, friends,
and professionals to better understand the individual’s behaviour.
FASD THAT ARE NOT TRUE
Belief: A diagnosis of FASD is a label that will
make people want to give up on the individual.
THIS IS NOT TRUE.
Belief: Mothers know that they could harm their
babies by drinking during pregnancy but they still
do it because they don’t care. THIS IS NOT TRUE.
The truth is:
• A diagnosis tells you where their deficits are.
• A diagnosis helps you understand how to help
your child.
• A diagnosis can help an individual to understand his or her own disability and help with
feelings of being misunderstood.
The truth is:
• Pregnant women do not purposely harm their
babies.
• Family, friends, and the community all play a
role in helping pregnant mothers to not drink
while pregnant.
• Some women do not know that they are
pregnant right away.
• Some women are dealing with addictions,
trauma, abusive relationships, or mental health
issues.
• Some individuals living with FASD may not
understand the implications of their drinking
because of their disability.
Belief: Individuals with FASD are unmotivated or
unwilling to take responsibility for themselves.
THIS IS NOT TRUE.
The truth is:
• Individuals with FASD are not trying to be
difficult. There is usually an underlying reason
for the behaviour.
• Individuals with FASD may not understand cause
and effect and therefore not understand the
implications of their actions.
photo credit to Tourism Saskatchewan
STRATEGIES FOR SUCCESS
Strategies for Success with Memory Deficits
• Individuals with FASD need more time
to learn some things. You can help by
being patient and explaining the same
things multiple times.
• It is helpful if a person receives the same
message in the same form from all of his
or her support workers – it is important
to repeat, repeat, repeat.
• Asking individuals with FASD to repeat
instructions back does not ensure that
they understand the meaning of what
they are saying. Requesting that they
“show you” or explain in their own words
will more accurately demonstrate their
level of understanding.
• Re-teach rules in different settings. Use
visual charts and reminders.
• Communicate while being mindful of an
individual’s ability to process information, be aware of the pace and tone of
your speech.
• Use agendas, cell phones, computer
calendars and anything else a client
feels comfortable using to support the
individual’s memory issues for important
appointments and day-to-day activities.
• Use a series of notes, memos, pictures,
or anything else that works around the
home.
• Remind clients of the time they need to
leave, the lunch they should bring and
where they are going.
17
• Be patient, memory is a lifelong issue.
Strategies for Success with
However, years of practice and support
Cause and Effect
can often result in self-sufficiency where • Use clear and concrete words in short
otherwise you may not have expected it.
sentences. Say exactly what you mean
• Use concrete, visual reminders to
with fewer words and you will find your
messages are better understood.
support success
• Try to have fewer distractions when
individuals need to listen to instrucStrategies for Success with Confabulation
tions or make a decision. This could
• Understand the difference between
include environmental factors such as
confabulating and “lying.”
background noise, bright lighting, or the
• Avoid asking questions you already
tone of your voice.
know the answer to, like “Are you sure
• Use a calm and clear voice. Messthat’s what happened?”
ages can be lost when given in a highly
• Ask only for the information needed at
emotional or excited tone. Simple
the moment.
gestures along with clear and direct
• Ask short questions with definite anlanguage may be helpful.
swers.
• Since individuals with FASD have
• Ask the individual to tell you the story
difficulty associating actions with
in a different way – for example, write it
consequences, make consequences as
out or draw it.
immediate and relevant as possible.
• If the confabulations are not serious • Use positive reinforcements to encouror indicative of danger, allow them to
age good behaviour.
engage you with the story.
• Create visual reminders of expectations
• If the confabulation indicates danger,
and outcomes.
examine the statements further.
• Map out decision making so clients have
• Use confabulations as social stories to
a concrete visual to represent the proper
teach lessons and explore otherwise
path and consequences of each path.
unexplored issues.
• Use social stories that are age appropri• A client’s dignity is of foremost concern
ate to describe the effects of possible
– always ensure your questioning is
actions and inactions.
respectful and understanding.
•
•
•
•
•
•
Strategies for Success with Time
Digital clocks are easier to understand
than a clock with hands.
A person with FASD may need help being
able to anticipate appointments or activities, so post calendars and schedules
when possible. Pictures can be useful as
well as words.
Help to plan what to do and when
by creating as much predictability and routine in one’s schedule as
possible.
The use of timers is helpful for gauging
time. These can be used when an activity is starting. They can also be sent with
an individual if they need to take a break
from a group setting to let them know
when to come back.
A simple phone call reminder can save
a client from missing an appointment or
being late to work. Finding caregivers
willing to do this will create a lifelong
support system.
Advocate with school and employers for later start times and increased flexibility as time is an issue
most clients will face their entire lives.
• Recognize the potential impact of life • Explain what is safe to borrow and lend
– use pictures, examples and social stotransitions before they happen (moving
from a family home to a different home,
ries. Work with clients to understand
being removed from cultural traditions).
monetary value. For example, the cost of
a music player equals 15 hours of work.
• Prepare for transition and give plenty of
forewarning.
• Practice the transition ahead of time.
• Use social stories that help to explain
what will occur in future transitions.
Repeat them regularly.
• Use strategies to make transitions in the
day’s activities. For example, use verbal
prompts to initiate the end of one activity and shift to the next activity.
• Use times, activities, and television
shows to indicate when a transition may
happen.
•
•
•
Strategies for Success with Transitions
•
• Provide a predictable schedule. Having
the schedule on a wall, phone, calendar,
fridge or any other easily viewed location is helpful.
Strategies for Success with
Ownership Issues
Write names on items or colour-code
property.
Teach associations between specific
items and their owners.
Establish and implement appropriate
consequences for taking other people’s
items. Ensure this is timely and consequences are swift but efficient.
Practice borrowing. Have a client borrow a pen at your office and return it.
Try this vice versa by borrowing a client’s
phone while he or she is in your office
and return it before that person leaves.
Strategies for Success with Impulse Control
• Individuals with FASD have trouble with
impulse control in social situations, thus
it may be helpful to develop “role playing scripts” or social stories for common
situations.
• Cues and reminders can help individuals
with FASD control impulses by interrupting the process between impulse and
action.
• Identify a support person (family or
friend) that the individual can call when
he or she has a question. This person’s
role is to provide judgment-free guidance upon request only.
• Model impulse control out loud (say
what you are thinking). For example: “I
really want to buy a chocolate bar, but
I also want to save money to buy a new
t-shirt.”
• Develop a case plan that includes oneon-one support, wherein the individual
can explore his/her perspective, discuss
other perspectives and make informed
decisions.
• Avoid situations in which clients have
not been able to control their impulses
before without supervision.
18
Strategies for Success with Social Skills
Strategies for Success with Dysmaturity
Strategies for Success with Sleep Issues
• Build on strengths and interests that can • Adjust expectations to the level the • Develop a calming sleep routine. This
engage them in social activities.
should include a slow transition from
individual is functioning at.
evening activities to getting ready for
• Adjust expectations to fit a person’s • Utilize strategies targeted at the level of
bed and going to sleep. Same bedtime
functional, not chronological, age.
developmental age, not chronological
every night. Avoid sleeping in. No telage.
• Set up opportunities for the individual
evision or computer an hour before bed.
to have positive experiences ensuring
• Model good behaviour.
No sugar after 6 p.m. Warm bath before
appropriate
supervision
and
boundaries
bed.
• Role play different social situations.
are
in
place.
Make sure to role play each scenario in
• Limit the amount of visual stimulation in
different settings and involving different • Mentors and support workers are great
the bedroom. Limit furniture and ensure
resources to help individuals who are
people.
that personal belongings can be stored
functioning
at
a
lower
level
better
unout of sight.
• Teach examples of what healthy friendderstand
and
practice
age
appropriate
ships look like and help to identify
• The introduction of relaxing music may
behaviours and skills.
positive friends.
be helpful for some individuals.
• Have open conversations about sex
• For some individuals, taking a melatonin
Strategies for Success with
and sexuality, including contraceptives,
supplement can help to regulate sleep.
regular sexual testing, and other issues
Sensory Dysfunction
• Textured and weighted blankets
pertaining to sexuality.
• Think accommodations: “How can
may be helpful depending on an in• Avoid large groups of people for social
I adapt the environment to support this
dividual’s sensory profile. If financinteractions. One or two friends is often
person to succeed?”
es are an issue, try sleeping bags
much more significant than a group.
and/or heavy blankets such as wool
• Recognize the potential sensory impact
fiber.
• If the opportunity for a mentor is availof noise, smells, environment, clothing,
etc.
able to your client, this can improve
quality of life for both the client and the • Limit distractions.
individual’s family.
• If the seams in socks are irritating, try
turning socks inside out. Remove the
tags from clothing, as well as strings,
flaps, buttons, long shoelaces, etc. if
they are too distracting.
• Scents may be bothersome to some
people. Use scentless detergents.
20
MENTORS
Being a mentor to someone with a cognitive disability is a service intended to bring
greater quality of life and increased independence to the individual (mentee) you
are supporting. A mentor’s role is to build
a relationship based on trust with the mentee, while presenting opportunities for that
individual to learn, grow and be more selfsufficient in everyday life. A mentor acts as
a positive role model, increases community
involvement for the mentee, helps teach
and improve daily life skills and offers a
variety of other supports where needed.
21
with FASD. As a child with FASD becomes
a teenager, the need for guidance actually
may increase yet the guidance and support
received decreases. Reasons for this vary,
but it is likely that those within that youth’s
circle begin to have changing expectations.
A coach or educator may be less willing to
provide direction and guidance in decision-making and problem solving as they
want to promote independence.
Many people do not understand that FASD
is a lifelong disability and that life lessons
need to be learned over and over again.
The youth themselves may have changing
needs and expectations. They might see
their peers gaining autonomy or making
decisions and, understandably, they want a
degree of independence in their life. Peers
may lack the knowledge or skills to support a friend affected by FASD because the
issues faced become very serious. Issues
such as violence, substance use, sexuality
and dating are complex even for adults.
no answers, thus the level of support decreases. It is also likely that families receive
conflicting messages from professionals.
The result is often confusion and self doubt
about how to best guide their child. This
can take quite a toll.
A mentor can make a difference in the life
of a person with FASD, particularly during the teen and adult years. A mentor
is a person who is willing to care about,
guide, and support a young person or adult
with FASD. Mentors share in the life of the
individual, they provide opportunities for
a variety of experiences, implement the
necessary structure, assist with learning
daily living skills, guide decision making,
and support individuals when mistakes are
made. The support is provided in a genuine
and encouraging relationship. The mentor
does not replace other members of the
individual’s circle of support; a mentor becomes one of the people in that circle. This
is an important process for the youth with
FASD and the parents or caregivers. The
parents remain actively involved, as they
know their child best, but the involvement,
insight, and energy of the mentor can provide a different kind of support along with
fresh ideas.
Individuals with FASD require guidance
more often and a level of guidance that is
more structured and long term due to their
disability. That being said, a mentor can be
a perfect resource to provide extra support.
The relationship between a trusted mentor and an individual with a disability, such
as FASD, can result in a variety of positive
outcomes. Over time the relationship can
grow and reduce the feelings of isolation,
loss, and failure that so often characterize
the lives of individuals with FASD.
Due to these reasons, young people with
FASD commonly begin to experience strugYoung children with FASD tend to naturally gles during the teen and young adult years.
receive support. Perhaps not as much sup- In addition, by the time the teen years
port as they require, but the chances that roll around, stress and frustration may be
parents, caregivers, family members, edu- mounting for parents, family members, and
cators, coaches, and school peers create caregivers. Members of the circle of sup- To find out more about mentoring or how
a circle of support around that individual port can become less resilient and feel to access a mentor for someone living with
are greater than that of teens and adults that they have tried everything and have FASD please visit www.saskmentors.com.
RESOURCES
The FASD Network has a variety of resources that can
be found on our website, www.saskfasdnetwork.ca.
To order resources please contact the Network at
1-866-673-3276 or [email protected]
Network publications:
• A Guide to Awareness and Understanding
• The FASD Network’s Supports & Services
• The FASD Network’s Training & Events
• Tips for Caregivers
• Tips for Employers
• Tips for Justice Workers
• Tips for Support Workers
• Tips for Teachers
22
FASD NETWORK
OF SASKATCHEWAN
510 Cynthia St
Saskatoon, SK
1-866-673-3276
www.saskfasdnetwork.ca